I feel like a kid in a candy store. Guess what is FINALLY coming back on TV on Thursday night on ABC?? Just guess? So much for chit chat night ladies… my butt will be sitting in front of my television hopelessly devoted and savoring every moment of the new episode of GREY’S ANATOMY. OMG…. did I say OMG??? After the week I had last week I totally deserved for it to return last week but I can wait 4 more days. Maybe. I think I am able to hold out because Patrick Dempsey is on all these commercials for his new movie. Sigh… McDreamy is his navy blue scrubs… 13 year old moment done now! Back to reality. LOL

Our Kyleigh update of the past few days is that we are really having trouble keeping her cleaned out. Even though we had a really good looking KUB last Sunday by mid week she was a mess again. Grunting, turning blood red, screaming and crying trying to have a bowel movement. All of this WHILE on her dose of laxative. And she has a bit of a yeast infection growing in the diaper area so I am sure THAT cannot feel good. The fevers and vomiting have disappeared which I am EXTREMELY thankful for. Its just so frustrating to know that there is something “not right” and whether that thing is small or large the pit of the stomach feeling is still the same. My child who has always been the perfect sleeper is taking 2-3 hours to put to bed at night. Waking up at all hours, crying…. sometimes grabbing her diaper and screaming… sometimes burning up… sometimes like she is just out of her head. I have no idea what is wrong or why she is crying or how to help and that is enough to send anyone over the edge. I just know something is not right.

On the subject of that “feeling”… I don’t know that it ever really goes away. It subsides every now and then… or I find ways to push it out of my mind. But I worry. I am headed into my busiest season ever and I feel like I have Ky who, in many ways, is more volatile now than she ever has been. At least before it was the SOS. We were waiting to gain weight. We were BETTER after the heart surgery… this time I am worried. I am worried that I will be out of touch at a wedding and something will happen to Ky. Something that whomever is with her will not know how to handle. I write manuals and prepare emergency packets. I leave lists of phone numbers, schedules, organized baggies of meds with times written on them. Medical notebooks and folders and lists and schedules… Two years into this new life I am still astonished that I am actually here and actually doing this. I still have this sting of disbelief and I spend many days thinking… Is this really happening? Am I awake or is this all a dream? Will I ever go another day without feeling this way? Sigh………. I will just enjoy my Grey’s Anatomy and ignore reality for just an hour. That is what I need… just to forget everything for a bit.

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